Today, I am grieving. And celebrating life. I am so torn, and have so many emotions. Yet compared to this incredible little man's mother and father, anything I could feel is a drop in an ocean of lifetimes, which they lived second and minute by minute, days weeks and months, played out at Royal Childrens' Hospital in the Paediatric Intensive Care Unit over the last 7 months. Finally, on 13 September 2013 their perfect little 19 month old man Blake grew his angel wings in the arms of his mummy and daddy.

I read the news, and I was holding my precious baby boy Parker, and he was staring into my eyes with such love and trust, with that little 8 month old face always waiting for me to make the next move. Those eyes, the trademarked yet unique epicanthic folds that narrow into joyous slits at the first tickle. The little mouth, making the 'bah bah bah' and the cheeky curious expression, wondering why mummy was crying. I stared and drank him in, hugged him and celebrated life.. his, Blake's, the time Di and Paull had with him and the time we all have with our own babies.. both our 46'ers and our extra special ones. At that second, all I could see reflected in his features back at me was Blake. He will always live on a little, in all our babies' lives, faces and hearts.Blake Paull Gordon-Cooke was born with Down syndrome, which mummy and daddy took with the grace they take everything else in their lives- a bit of humour, and a lot of love. Diane quickly integrated herself comfortably into a large community of other mummies and daddies, all who have babies featuring 'that extra little bit'.

In Diane's words, from the Facebook page Blake's Million Smiles ..

"Thank you for allowing us to share our gorgeous son with you. Blake was born on the 4th of February 2012 and delivered to the loving parents Paull and Diane.. A much loved and longed for precious gift indeed ! Within a few days we learned that Blake has an extra special bonus 21st chromosome .. In other words he has Down Syndrome. This said he has been extremely healthy the whole first year of his life, smiling and charming his way through life, melting the hearts of all who meet him... To our knowledge our little man was very healthy and doing very well in all aspects of development... Blake attended physio, speech therapy, playgroup and a music group and loved mixing with other children and adults ... he absolutely loves music !!! And most of all he is a beautiful boy with loads of personality and charisma."

I am also going to include some information about Blake and his condition, written by Diane.

"On Saturday 9th of March 2013 unbeknownst to us our son started us on an incomprehensible heart breaking journey... For a couple of days Blake had a bit of a cold, on Saturday he sounded a bit too chesty so we decided to take him to Bendigo hospital just to be safe expecting to be told we were overreacting... How very wrong we were !!!!! As Blake chatted and played with the triage nurse she stopped and looked shocked at his blood oxygen saturation when she placed a monitor on him.. She quickly consulted another nurse and immediately Blake was whisked away and put on oxygen !!! He was diagnosed with bronchiolitis but also given antibiotics just be safe.. As with all these illnesses they run their course and we were told that Blake may take a little longer than the 6ish days to get through... By around day 12 or so things started to appear "not quite right" as we couldn't get him totally off the oxygen and his xray didn't improve or change much, he then seemed to get another virus ... During this time dad (Paull) had needed to stay away from the hospital for several days while getting through a heavy cold himself...Mum (Diane) stayed with Blake. On the 29th of March (20 days after admission) Blake and mum were transported to Royal Children's Hospital ... It just happened to be the day before the Good Friday Appeal. After 2 horrendous nights on ward Blake was admitted to ICU."

This was the start of their journey. He went on over the coming months to be diagnosed with two holes in his heart- a large VSD, and a small ASD. Along with this went secondary pulmonary hypertension, and to complete 'Blake's trinity', came the interstital lung disease a little too rare for diagnosis.

This is not just Blake's story. This is the story of a mother who sat next to her son's cot, in hospital rooms, for over 6 months. That cot changed, the ward and hospital changed, but Diane was a constant in Blake's life. Blake saw his mummy every single day, sunrise to sunset, for countless cuddles, chats and smiles, baths, playtimes and dreaded 'nasal prong changes'. He saw his father every single free day and minute he had, around the clock. Paull slept on armchairs to give his wife a break so she could sneak off for a cup of tea. Diane consulted with ICU nurses to help her friends with children who had medical issues, and get them the best solution. Di remembered birthdays, events, offered condolences, congratulated our wins, and has been there for every one of her friends during this entire journey (not to mention many years before it started.)

When my son Parker was born, I found Diane and we instantly hit it off. She was funny, kind, gracious, and CARED. Boy, did she care. She knew just as much about Parker as I did, and to this day has checked in on every milestone event in both his life and mine. Unfortunately, even though I have now known Diane since my boy was 2 weeks old, and he is now 8 months.. for 6 months of our friendship her calls, texts, messages and Facebook posts have been from inside the walls of a hospital.

Blake has touched so many lives during his busy, action-packed stay with his mummy and daddy. Because of him, there are rooms filled with new hospital toys for children, 2,000 Facebook fans waiting for every update, and countless people all over the globe who have been inspired beyond belief by the selflessness and love shown by this family for each other.

Di and Paull now have a future looming they had not planned for, and lots of catching up to do in many areas, including financially. Please help to make it easier for them, if you know them, or even if you don't. If you are able, you will have my eternal gratitude. Here is their postal address to send respects and condolences.

Diane and Paull Gordon-Cooke PO Box 141 Wedderburn Vic 3518Australia

Comments

Tamara

09/13/2013 9:05pm

A lovely tribute to Blake and his wonderful family. Wishing them strength in this terribly sad time. What an inspirational family

Hi. My heart goes out to little Blake and his parents and I am reminded how precious and fragile life is, especially the life of our children. I'd love to help, to post your story on my web page and Facebook and ask my members to donate whatever they can. Would that be ok? Thanks, Sarah

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Kat

09/14/2013 4:29am

That is a beautiful thing to do, Sarah. Thankyou :) Kat

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Kat

09/14/2013 2:47pm

Sarah, a fundraiser has now been started for Blake's family. If you can help in any way, please join the group here.

https://www.facebook.com/groups/579945552063867/

x Kat

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Parker, who created a big sister and was born a little brother in January 2013, has Down syndrome. It takes a village to raise a child. This place is for his village, and friendly visitors.